When my oldest was in kindergarten, each child in his class was assigned a number and asked to show that amount. If they had the number 50, they could bring in 50 M&M’s or 50 marshmallows, or 50 whatever. Somehow we landed the big kahuna–one thousand. My son hopped with excitement, waving his paper in the air, but his excitement soon waned as we spent what felt like an entire Saturday afternoon stringing one thousand pastel-colored beads onto a very, very long rope. We came away realizing that a thousand is a lot. A whole lot. So when I think of a number up in the millions, it’s hard for me to even wrap my mind around it.
Here are some numbers that boggle me–350 million people living with chronic Hepatitis B worldwide, with an estimated 130 million in China alone. Just as a basis for comparison, the population of Japan is 127 million. If a photo-taking satellite zoomed in on that super power country, and every man, woman, and child stepped outside and waved for a massive group photo, they would still be outnumbered by Hepatitis B carriers in China.
I’ve heard that there’s safety in numbers, and to a certain degree, this number gives me a strange sense of comfort. My daughter is hardly alone and the great majority of those 130 million Chinese with Hepatitis B will live long lives, but I’ll be honest; more than providing comfort, that number infuriates me. For well over 20 years an effective vaccine has been available for Hepatitis B, but not until very recently has this pandemic been taken seriously in China. Instead of education, there has been shame and denial and discrimination. My daughter’s birth mother probably never knew that in 95% of cases, a series of shots given to her baby in her first 24 hours of life would have saved her forever from the virus. But then again, my daughter’s birth mother may not have even known she had the virus herself.
I recently spoke to a Chinese immigrant to the U.S. who was shocked to learn after she’d donated blood that she tested positive for Hepatitis B. She immediately phoned her mother in China, assuming she’d be shocked as well. Instead, her mother said simply, “Oh, yes. Liver problems run in our family.” China has failed to educate their population on the causes, the dangers, and the prevention of hepatitis. As a result, one of the most common special needs on any agency’s Waiting Child List is Hepatitis B.
There are so many things I could say about hepatitis; that these kids aren’t slowed down by it, that parenting a child with hepatitis is like parenting any other child, that these children will most likely live long lives and die of something unrelated to their livers, but what I keep coming back to is this: When it relates to my daughter, I feel hesitant to talk about any of it. I am in no way ashamed of her; she fills us with pride, but I know that the stigma of HBV is not restricted to China’s borders. Universally, people are afraid of what they don’t understand and can easily dehumanize a disease without a face.
When we first brought our daughter home, we kept a vow of complete silence and the word hepatitis was never uttered outside the walls of our home. Cholita’s own grandparents thought she was a non special needs adoption. Soon after her arrival in the United States, we learned that she wasn’t a typical child with Hep B and that she’d require treatment. We wanted the support and prayers of our extended family and as we would have guessed, they were unfailingly understanding and loving. End of disclosure.
Then one Sunday morning, Cholita was asked to give the opening prayer in her church primary class. Among other things, she said quite clearly, “please bless my liver.” The teachers raised their eyebrows and looked at me. I laughed nervously and stammered, “probably next week she’ll be praying for her heart….maybe her spleen….” It wasn’t the smoothest recovery.
In a play group, Cholita picked up a doctor kit and proceeded to give her friend’s mom a very professional blood draw, complete with an imaginary tourniquet. “Wow,” said the mom, “She knows what she’s doing.” Cholita held out her own arm. “Here’s where I got my blood test yesterday,” she said. “Do you see the dot?” I pushed her arm down and offered her gum.
A neighbor once asked Cholita how she was doing. He wasn’t asking about her health; he had no idea there was anything health-wise to ask her about, it was just a casual question. Cholita said, “Good! No Neupogen this week, just Interferon.” Our neighbor looked at me for translation and I felt my cheeks burn hot. “Umm. I didn’t quite catch that either.” Cholita squinted her eyes at me in a confused expression; obviously her mother had become hard of hearing. She took a deep breath and yelled, “I SAID NO NEUPOGEN THIS WEEK! JUST INTERFERON!”
So people started asking questions–not nosy, rude questions, just concerned questions, “Is Cholita O.K.?” “Is there anything you need to talk about?” My twelve year-old daughter came home from school one day with worry in her eyes. “Mom,” she said, her voice shaky. “I’m so sorry. Mrs. H. asked me why I needed a ride home yesterday and I said you were with Cholita at the hospital. Then she asked me why Cholita was at the hospital and I didn’t know what to say. I’m so sorry!” She was near tears.
It was clear to us that in our situation, with a chatty little girl getting at least two needle pokes a week, our non-disclosure policy was weighing on the whole family. That night we role-played. We still didn’t plan to introduce our daughter with, “This is Cholita; she has hepatitis,” but in certain situations and with certain people, we began to talk. And as we did, our family let out a collective sigh of relief. As it turns out, we’d been underestimating people. All around us, we felt love and support.
The reaction was so overwhelmingly positive that I was shocked when a friend called me one evening in a panic. I was making dinner, at the stove breaking apart ground beef with a wooden spatula. My friend’s words tumbled out faster than I could even process what she was saying. She’d just heard about Cholita’s hepatitis. Since she hadn’t known, she’d held Cholita on her lap the day before and read her a story. She’d already left a message with her doctor. She told him it was urgent. She’d heard there was some sort of shot she should get after an exposure……
I signaled to my son to take over the ground beef. As my friend ranted, I went upstairs to my closet where I have a two door barrier between myself and my kids. Sitting on the floor with my back against the dresser, I had one of the most awkward conversations of my life. I’m sure it stands out in my friend’s memory as well. She was so misinformed. Thinking about it now, she was laughably misinformed, but at the time it wasn’t funny at all. She didn’t know that Hep B isn’t transmitted casually and that our daughter couldn’t cough it at her. She didn’t know that HBV is spread through blood to blood contact, and not spread like the flu. She didn’t know that HBV is a vaccine preventable disease. So we talked and she cried; her tears a mixture of relief and embarrassment. “I’m sorry,” she said, “It’s just that I’ve never met anyone with Hepatitis.” I assured her that she had; she just didn’t know it.
For my friend, the turn-around was instantaneous. She’s no longer afraid. She hugs Cholita. She kisses her. She can never again dehumanize hepatitis because for her it’s now more than just a word or a mind boggling number. This virus has a face. As a matter of fact it has hundreds of millions of them. But for me, it all comes down to one. One happy face that I get to see every morning at the breakfast table. One face that will always be imprinted on my heart.
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